Ask Kathy M. Archives
A Collection of Questions and Answers from TBI Advice Expert - Kathy Moeller

Topic: Therapy - Home-Based Rehabilitation

Question:

Dear Kathy M.,

Our son, Matt, was in a car accident February 14, 1999 and he sustained a severe head injury. He was in a coma for about 4 months. The doctors gave us little hope that Matt would ever wake up and if he did, he would likely be hooked to machines and unresponsive to any of us. He was in the hospital for about 45 weeks.

Matt is now at home and amazes everyone. He has made great gains cognitively. We have had great support from our church and family and Matt is surrounded with love and affirmation.

What else can we do for him? I would really appreciate any information you have on computer programs and activities we can involve him in to keep his alertness on the rise. I would also appreciate any information on programs available where he could receive the best therapy available.

The rehab center where he goes is not specific to TBI, so we were hoping there may be a program “out there” that is more suitable for him. Thanks for anything that you can offer in the way of help or suggestions. It is difficult to know exactly where to look for help. I do want to acknowledge that we believe that Matt's being here is an answer to prayer and that God does have a plan for Matt; his spirit of joy and perseverance have touched many lives.

Thanks again. Pat


Kathy's Response:

Dear Pat,

What a great story of recovery! It sounds like you are already doing all the “right things” for Matt and are well on your way to finding more resources, as well.

I think you are rowing in the right direction to keep him stimulated and alert. The question is how best to do this also keeping in mind what his and your objectives are. I’m curious, is he verbal at all? Can he speak to you and/or write? If so, at what level? This matters in terms of the kinds of computer (or other) programs you might want to consider.

Networking with other families

The quickest way to research options that have worked for others is to network with other families. Besides any local support group you might visit, another good place to do this is on the Internet.

I facilitate an Internet e-mail discussion and support list for family members of persons with brain injury. It is called “ASSIST-TBI.” There are others too (CARE-TBI and TBI-SPRT). When you join these lists you can start asking the same questions you asked me, except that you will have access to several hundred people (including some professionals) who will have information and feedback for you.

“BI-Time”

I hope you realize that Matt is very early in his recovery and may be able to make tremendous gains (based on what you have described so far). One year is barely enough time to get started with the rehabilitation process, in many cases, so please do not think that “what you see” (currently) is “what you get” (down the road). I do not know if you were told this or not, but many families are led to believe that whatever recovery they see in the first year (some medical professionals say “three years” some extend it to “five years”) is basically, all the recovery you can expect. They are generally talking about “organic healing” not functional recovery and the two are very, very different! Keep this in mind.

People who have had brain injuries are on a different time-table from people who have had different injuries. They are often on what I call “BI-Time,” which is like slow motion recovery to other people. Improvements are so slow and incremental it may be like trying to watch a flow open without the benefit of time-lapse photography! The flower is opening up all right the changes day-to-day are just too incremental to be noticeable to most people.

Therein lies the importance of providing foundations for the person that help him or her build a basis for increasing function in the future. Therein lies the importance of having goals a person toward which the person (and the family) can work.

I warn you it can take many years. In my case, it took two years before I could function well at an entry-level job. My injury was considered “moderate” (I had been a marketing executive with twenty years of experience). I have friends whose brain injuries were more severe and it took many of them longer than that to get back to entry level work in some cases three to five or more years. I have another friend (whose injury was very severe and was on what they called a “nursing home track” after two years of rehab), who battled back for eight years (and is still making gains). She battled back, inch-by-inch, until she was able to take care of herself and go back to school. She finished her Masters Degree a few years ago and is working now as a journalist.

If it had not been for her family, this would not have been possible. They continued her cognitive (and physical) rehabilitation after she was discharged, and just never gave up. I do not know if you can imagine how slow the progress appeared, and what the temptation was to give up at any given apparent “ending point.” But they did not give up, and she is doing well.

Home-based cognitive rehabilitation

You mentioned the fact that Matt has made cognitive gains. This is important in terms of thinking about how to structure a home-based cognitive rehabilitation program for him. Many families have been down this road and will be able to help you do the same for Matt.

Resources include the national association (Brain Injury Association, Inc.). Their web site is www.biausa.org. Other resources (including books and professionals who can help you), will emerge as you continue your networking and research.

Hope this helps! Keep up the good work, and do not give up. Each plateau may simply be a temporary resting place, not the finish line!

Kathy M.

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